EAHAD 2023 Programme

All timings of activities and sessions will take place in GMT (Greenwich Mean Time / CET–1)

TUESDAY, 7 FEBRUARY 2023

WEDNESDAY, 8 FEBRUARY 2023

THURSDAY, 9 FEBRUARY 2023

FRIDAY, 10 FEBRUARY 2023

TUESDAY, 7 FEBRUARY 2023

WEDNESDAY, 8 FEBRUARY 2023

Time	Title	Speakers
09:30 – 11:00	MULTIDISCIPLINARY EDUCATIONAL SESSION: Supporting Sports in Haemophilia	Jan Blatny David Stephensen
09:30 – 09:55	Tailored treatment for supporting sports in haemophilia	Thomas Hilberg
09:55 – 10:15	How running changed my life	Clive Smith
10:15 – 10:35	Personalised support of sporting activities	Merel Timmer
10:35 – 10:50	What sports mean to my son and me and what are the challenges (interview with patient’s parents)	Linda Myrin Westesson
10:50 – 11:00	Panel Discussion
11:00 – 11:30	Coffee Break/Poster Viewing
11:30 – 18:30	SATELLITE SYMPOSIA
11:30 – 12:45	Satellite Symposium 1
	Satellite Symposium 2
	Satellite Symposium 3
12:45 – 13:45	Lunch Break/Poster Viewing
13:45 – 15:00	Satellite Symposium 4
	Satellite Symposium 5
	Satellite Symposium 6
15:00 – 15:30	Coffee Break/Poster Viewing
15:30 – 16:45	Satellite Symposium 7
	Satellite Symposium 8
16:45 – 17:15	Coffee Break/Poster Viewing
17:15 – 18:30	Satellite Symposium 9
	Satellite Symposium 10
18:30 – 19:30	Poster Networking Platform

THURSDAY, 9 FEBRUARY 2023

Time	Title	Speakers
08:45 – 09:00	WELCOME AND INTRODUCTION	Mike Makris
09:00 – 10:30	SESSION 1: Gene Therapy	Pratima Chowdary Kate Talks
09:00 – 09:30	Current status of Gene Therapy in haemophilia	Radek Kaczmarek
09:30 – 10:00	Monitoring and dealing with GT adverse events	Wolfgang Miesbach
10:00 – 10:30	What should a patient and payer expect	Brian O’Mahony
10:30 – 11:00	Coffee Break/Poster Viewing
11:00- 12:30	SESSION 2: Diagnosis	Flora Peyvandi Rhona Maclean
11:00 – 11:30	30-50% von Willebrand Factor: Low, normal or VWD	Michelle Lavin
11:30 – 12:00	The use of NGS to diagnose inherited platelet disorders	Eva Leinøe
12:00 – 12:30	Do global assays have a role in diagnosis and management of bleeding disorders?	Yesim Dargaud
12:30 – 13:30	Lunch Break/Poster Viewing/EAHAD Annual General Meeting
13:30 – 15:00	SESSION 3: Comorbidities	Jan Blatny Gary Benson
13:30 – 14:00	Use of antithrombotics in bleeding disorders	Roger Schutgens
14:00 – 14:30	Dealing with steroid side effects and withdrawal	Mark Gurnell
14:30 – 15:00	Why haemophilia centres need a hepatologist	Vincenzo La Mura
15:00- 15:30	Coffee Break/Poster Viewing
15:30 – 16:30	SESSION 4: Future Treatments	Hervé Chambost Jecko Thachil
15:30 – 16:00	Future therapies for von Willebrand Disease	Caterina Casari
16:00 – 16:30	Current status of rebalancing therapies	Pratima Chowdary
16:30 – 16:45	Break/Poster Viewing
16:45 – 17:45	SESSION 5: Clinical Practice	Maria Teresa Álvarez Román Charles Percy
16:45 – 17:15	PK in daily practice for haemophilia and von Willebrand Disease	Marjon Cnossen
17:15 – 17:45	Acquired haemophilia	Maria Eva Mingot Castellano
19:30 – 00:00	Networking Evening (subject to an additional fee)

FRIDAY, 10 FEBRUARY 2023

Time	Title	Speakers
08:30 – 10:00	SESSION 6: SLAM	Robert Klamroth Keith Gomez
	Consensus On Outcomes of Physical Function And Activities For Persons With Haemophilia: Results From The IPOP Study	David Stephensen
	Change In Haemophilia Joint Health Score (HJHS) During The Phase 3 Xtend-1 Study Of Efanesoctocog Alfa In Patients With Severe Haemophilia A	Christoph Königs
	Recurrent Severe Angiodysplastic Gastrointestinal Bleeding in Patients With Different Bleeding Disorders Successfully Treated With Pazopanib (VOTRIENT®).	Noelia Vilalta
	The Effect of F8 Missense Mutation And Route Of Administration On Desmopressin Response In Nonsevere Haemophilia A Using Population PK Modelling	Michael Emanuel Cloesmeijer
	Prevalence And Characteristics of FVIII-Specific Antibodies in Persons With Haemophilia A	Ilja Oomen
	Subcutaneous Concizumab Prophylaxis in Patients With Haemophilia A or B With Inhibitors: Efficacy and Safety Results by Haemophilia Subtype from the Phase 3 Explorer7 Trial	Mary Mathias
	Building A Global Resource for The Long-Term Follow-Up Of Haemophilia Patients Treated with Gene Therapy: Collaboration Between The World Federation Of Haemophilia And National Registries	Donna Coffin
	Population Pharmacokinetic and Pharmacodynamic Modelling Of MIM8 Based On Clinical Phase 1/2 Data	Irina Matytsina
	Endogenous FVIII Activity and Procedure-Related FVIII Use and Bleeding: Post Hoc Analysis of GENER8-1	Doris V Quon
	Management of Dental Procedures and Surgeries in People with Severe and Moderately Severe Haemophilia B who were treated in Gene Therapy Clinical Trials with Etranacogene Dezaparvovec	Niamh O’Connell
10:00 – 10:30	Coffee Break/Poster Viewing
10:30 – 11:30	SESSION 7: EAHAD Activities	Ana Boban
10:30 – 11:00	EAHAD Coagulation Factor Variant Databases	John McVey
11:00 – 11:15	European principles of care for physiotherapy provision	David Stephensen
11:15 – 11:30	European nursing principles of care	Nanda Uitslager
11:30 – 12:00	AROSENIUS LECTURE 2023	Jan Astermark
11:30 – 12:00	What is the future landscape for treatment of inherited bleeding disorders	Glenn Pierce
12:00 – 12:45	Lunch Break/Poster Viewing
12:45 – 13:20	EAHAD RESEARCH GRANT REPORTS AND AWARDS	Robert Klamroth Mike Makris
12:45 – 13:05	Reports from the 2021 Research Grant winners:
12:45 – 13:05	Engineering and production of recombinant factor eight with long half-life and high coagulant activity	Michelle Lai
12:45 – 13:05	Knowledge and attitudes of haemophilic patients toward gene therapy (KAHaGeT)	Ilaria Cutica
13:05 – 13:20	Award presentations: Poster awards 2022 research grants awards EAHAD recognition awards
13:20 – 14:35	SESSION 8: LATEST CLINICAL TRIAL RESULTS	Robert Klamroth Mike Makris
13:20 – 13:35	Emicizumab prophylaxis for the treatment of infants with severe haemophilia A without Factor VIII inhibitors: An interim analysis of the HAVEN 7 Study	Maria Elisa Mancuso
13:35 – 13:50	Exploratory analysis to assess the Factor VIII (FVIII) haemostatic equivalency of the revised Fitusiran dose and dose regimen	Robert Klamroth
13:50 – 14:05	SERPINPC in persons with severe haemophilia (PWH): updated results from a multi-centre, multi-part, first-in-human study	Trevor Baglin
14:05 – 14:20	Efficacy and Safety of Fidanacogene Elaparvovec in Adults with Moderately Severe or Severe Hemophilia B: the Phase 3 BENEGENE-2 Gene Therapy Trial	Kaan Kavakli
14:20 – 14:35	Adults with haemophilia B receiving Etranacogene Dezaparvovec in the HOPE-B Phase 3 Trial experience a stable increase in mean Factor IX activity and durable haemostatic protection after 24 months’ follow-up	Michiel Coppens
14:35 – 14:50	CLOSING REMARKS AND EAHAD 2024	Mike Makris Wolfgang Miesbach

Allied Health Professionals Day

time	title
12:00 – 13:00	Registration and lunch

time	session	person
13:00 – 13:55	JOINT SESSION: NEW THERAPIES: How it affects the role of an AHP
13:00 – 13:15	Welcome Short introduction of all new therapies	Robert Klamroth
13:15 – 13:55	Panel discussion with members of the Multidisciplinary Team	Chair: Lotte Haverman Martin Scott (Haematologist) Cathy Harrison (Nurse) Anna Wells (Physiotherapist) Grainne O’Brien (Psychosocial Professional)

14:00 – 19:00 NURSES SESSIONS

time	session	person
14:00 – 15:00	SESSION 1 Non-Factor Replacement	Maj Friberg Birkedal
14:00 – 14:05	Introduction	Nanda Uitslager
14:05 – 14:25	Pharmacology of non-factor replacement therapies	Marlene Beijlevelt
14:25 – 14:40	Nurse’s experience of changing patient to non-factor replacement treatment regimens	Tami Barazani
14:40 – 14:50	Nursing challenges of new therapies	Renester Fenton
14:50 – 15:00	Q&A
15:00 – 15:15	Break
15:15 – 16:45	SESSION 2 Inherited Platelet Function Disorders	Nanda Uitslager
15:15 – 15:40	Overview of platelet function disorders	Malin Axelsson
15:40 – 16:00	Glanzmann’s 360 study	Kate Khair
16:00 – 16:10	Q&A
16:10 – 16:35	SLAM
16:10 – 16:16	Adherence, and Quality of Life In Patients With Haemophilia A, Haemophilia B and Von Willebrand – A National Cross-Sectional Survey	Cecilie Maria Lüthje Clausen
16:16 – 16:22	Nurse Led Screening Clinic for New Referrals	Renester Fenton
16:22 – 16:28	A Nurse Led Education Care Pathway and Training Program for Paediatric Patients With Severe FVIII Deficiency In Ireland	Caitriona Ferry
16:28 – 16:34	Subcutaneous Desmopressin as an Alternative to Intravenous Desmopressin	Femke Yspeerd
16:35 – 16:45	Q&A
16:45 – 17:15	Break
17:15 – 18:55	SESSION 3 The evolving role of the European Nurse working in bleeding disorders	Mary Kavanagh
17:15 – 17:35	The future of the nursing profession	Paola Di Giulio
17:35 – 17:45	Standards of Bleeding disorder Care for the future	Greta Mulders
17:45 – 18:45	Haemophilia Nurses Perception of our Role Workshop – Introduction – Groupwork	EAHAD Nurses Committee
18:45 – 18:55	SLAM Prize presentation	Mary Kavanagh Nanda Uitslager
19:00 – 21:00	AHP Day Networking Platform

14:00 – 19:00 PHYSIOTHERAPISTS SESSIONS

time	session	person
14:00 – 15:00	SESSION 1 Important clinical topics	Marie Katzerova
14:00 – 14:20	Patient or carer education/therapeutic education	Nathalie Grinda
14:20 – 14:40	Monitoring the recovery of joint bleeds	Floor van Leeuwen
14:40 – 15:00	Pain assessment in the current clinical set ups	Sarah Whitaker
15:00 – 15:30	Break
15:30 – 17:00	SESSION 2 Experience and change	David Stephensen
15:30 – 15:50	Quality of Life and response to physical activity Clinician’s perspective – adults	Mark McGowan
15:50 – 16:10	Quality of Life and response to physical activity Clinician’s perspective – children	Paula Loughnane
16:10 – 16:30	Quality of Life and response to physical activity Patient’s perspective	Clive Smith
16:30 – 17:00	Q&A/facilitated discussion with audience
17:00 – 17:30	Break
17:30 – 19:00	SESSION 3 SLAM (Six 10-MIN PRESENTATIONS)	Magnus Aspdahl
17:30 – 17:40	Psychophysical Assessment of Pain in Adults with Moderate and Severe Haemophilia: A Cross Sectional Study	Anthe Foubert
17:30 – 17:40	Comparison of Fitbit-Measured and IPAQ-SF Self-Reported Physical Activity in Young People with Haemophilia	Ruth Elise Dybvik Matlary
17:50 – 18:00	Using an Exercise-Based Telerehabilitation Approach to Manage Chronic Pain in People with Severe Haemophilia: A Mixed Methods, Feasibility Study	Paul Mclaughlin
18:00 – 18:10	Development of A Practical Statement for Primary Care Physiotherapists: Key Questions & Outcome Measures	Johan Blokzijl
18:10 – 18:20	Discordance Between Joint Pain and Imagery Severity in The Ankle Joint and The Contributors of Lower Limb Activity Limitations in Adults with Haemophilia: A Cross-Sectional Study	Valérie-Anne Chantrain
18:20 – 18:30	Consensus on Outcomes of Physical Function and Activities for Persons with Haemophilia: Results from The IPOP Study	David Stephensen
18:30 – 18:50	20-min Q&A
18:50 – 19:00	Scoring of the SLAM presentations by the audience
19:00 – 21:00	AHP Day Networking Platform

14:00 – 19:00 PSYCHOSOCIAL PROFESSIONALS SESSIONS

time	session	person
14:00 – 15:00	SESSION 1 We care for Women! Psychological consequences for carriers and Women with Bleeding Disorders	Lotte Haverman
14:00 – 14:20	A personal journey; from girl to woman	Manon Degenaar
14:20 – 14:40	Girls transitioning to adulthood: do they get the necessary support?	Gloria Rooney
14:40 – 15:00	A case study of psychotherapeutic treatments of haemophilia carriers with adjustment disorder	Petra Buckova
15:00 – 15:30	Break
15:30 – 17:00	SESSION 1 (cont.) We care for Women! Psychological consequences for carriers and Women with Bleeding Disorders	Lotte Haverman
15:30 – 16:00	Qualitative studies on carriers, bleeding disorders, and sexuality	Tessa van Gastel
16:00 – 16:30	Effect of Gene Therapy on carrier women	Ana Torres Ortuño
16:30 – 17:00	Experience of running Peer Groups	Christina Burgess
17:00 – 17:30	Break
17:30 – 19:00	SESSION 2 Support Groups	Gaby Golan
17:30 – 19:00	Workshop session on Support Groups
19:00 – 21:00	AHP Day Networking Platform

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